Should I test my 21 yr old for BRCA?

sharebear

Should I test my 21 yr old for BRCA?

sharebear

I'm BRCA1 pos., Ashkenazi Jew, Trip. Neg., and second occurrence at age 44. First diagnosed at age 32. They say my daughters should start their mamos or ultrasounds or MRIs 10 years before my dx. My daughter went to the dr. today and said she had very cystic feeling breast. Wants to send her for an ultrasound. Today is her 21st birthday. Should I have her tested for BRCA1? If she tested positive, I still wouldn't recommend an oopherectomy as she's young and wants kids, but we would definitely change how we monitored her.

I just don't know on this one. What's your opinions?

Sharon

chemo072

No opinion, just wanted to say Happy Bday to your daughter!  Why in the world did she schedule a docs appt for her birthday???  Seems like not the most fun thing to do.

is the chance that she is also brca1 positive 1/4?  or other? 

tos

Hi Sharon, me too.  I have a 39 yr old daughter who went thru bc this year, I had a recurrence this year, I am 61 and I have a 21 yr old daughter and all of us are brca1 positive.  My oldest and myself have been talking to the 21 yr old, we don't want to scare her but we are so worried about her being watched.  The genetic counselor told

her to start at 25. 

But we've been hearing about a small handful who have been diagnosed in their early 20's so trying to atleast have her see a Onc who specializes in bc

to get a check and be watched as he sees fit.

She wants to wait.  She's busy with college and working, we don't know what to do!

I wish I could advise you, having a daughter diagnosed is devastating.

I'll be following this thread to see what else other's have to say.

Oh and I was trip neg both times, my oldest daughter was multi-focal and one of her tumor's was trip neg.

Pam

sharebear

Her chance would be 1/2. She either got my gene or her dad's. It's on my side. My sister and I are different. I got the gene from my mom, she did not. So she will not pass it on to her sons. I also have a 17 year old daughter.

We were laughing about her birthday present to herself. It just happened to be the only day that fit into her work/college schedule for a pap/physical.

It would be great if she didn't and just had the normal percentages of getting this wonderful disease. But then if she tests positive, not only is that devastating to her, but what does that do to her for insurance purposes. Does that now mean she has a pre-existing condition? Will she be banned from life insurance? What about future employment?

So many questions. I was tested after my first cancer so it didn't matter. This could change her life!

Sharon

Sandra1957

edited

CaNatalie

Sharon,

Although I am Brca negative I was dx three weeks after my 27^th birthday. I had two ultrasounds prior to my dx that were deemed "normal". I would not rely solely on ultrasounds for detection. If I had the opportunity to be tested when I was 21 years old to tell me if I was at high risk I would have jumped on it! My understanding from my MD's when I took the Brca test is that the results only go in your chart if you allow it to and that it can remain completely confidential. I don't know if that is 100% accurate, but they seemed pretty certain. Anyways, getting this dx can be devastating. However, if she's going to get it or at high risk knowledge would only empower your daughter.

Best wishes on a frustrating situation and a happy belated birthday to your daughter. Here's to a birthday wish that she is Brca negative!

Take care,

Natalie

ravdeb

Here's what I did. I had no family history and the only risk I had was that I'm an Ashkenazi Jew. So, I went for the BRACA test and I'm negative. However, my daughter was 21 at the time and I had decided that if I was positive, I would have encouraged her to have an ultrasound and then, if she had the dense breasts that most young women have (I have very dense breasts and I'm in my fifties) then I'd try to get her in for breast MRI. Since you have bc, she should be eligible for the MRI.

I would not, and I think most doctors would agree with me, want my daughter at such a young age to have any surgery that would stop her from having children. I'd want her to get married and have her kids before considering any of that. I would also not have her be tested for BRACA yet. I'd hold off.

But, definitely...she should be monitored closely.

And then...just...breathe in the good air and live because she does NOT have cancer. Be sure she feels confident that she is doing all the right things, that this is a routine and then that's all.

That's how I would deal with it.

Good luck.

sharebear

I asked her how she felt about testing. After all, she is the one who has to deal with a positive test if that's what it is. She said for now she's comfortable with just the knowledge that she should be diligent about screening because of the family history. Her Dr. wouldn't give her birthcontrol pills but recommended another new method that is better. Not having a period since I was 31, I wasn't even thinking about how birthcontrol would affect her.

Sharon

ravdeb

Sounds like your daughter is mature and feeling fine with what she is doing. Seems like a good choice for her.

I had told my daughter not to use birth control pills...

Be well...

CalGal

Sharon -

I feel like I can speak from both sides of the issue ... both as the daughter (back when my mom was dx'd) and now, the one with bc mets ...

When my mom was dx'd with bc at age 46, I was 25 ... just finished grad school, new job, working out 5x/wk, single and hoping to get married and have kids ...  I knew I had a higher risk, since my maternal grandma also had bc (but I didn't realize the significance of it being pre-menopausal and thus, likely BRCA). 

When my mom's onc brought up the BRCA test for my mom (in terms of implications for me) ... I was strongly opposed ... since I would not have done any prophylactic surgeries.  I got my first mamm at 25 ... and did BSE's and thought I was being vigilent.  For me, it wasn't enough.  

I did not find out I was BRCA1 until AFTER my recurr bc and mets dx.  I also had the "dense" breasts.  I'm still younger than my mom was on her 1st dx, but I've had an initial dx, bi-lat lump's, rad'tn ... then recurr and mets to liver and likely (unrelated) kidney cancer ... and now, a lung met ...

I can't go backwards, but considering your daughter's age and the age of your dx, I would strongly urge your daughter to consider:

1.  FORCE website - www.facingourrisk.org (she will find many young women in a similar situation and the most up to date info for those who are BRCA or risk for BRCA); and

2.  Breast MRI - much more effective than mamm

's for younger women with dense breasts.

Hopefully, considering she has a 50-50 chance of inheriting the BRCA mutation (from known carrier), she'll be in the 50% who will be negative for BRCA1.

CalGal